Table 4.
Challenges Experienced by Patients
| Theme | Category | Code | Quotation |
|---|---|---|---|
| Making my wishes, preferences, and boundaries known | I want to physically function better | I want to feel better physically | “I'm particularly short of breath in the morning. I always ask for a bucket of air.” Female, aged 82, widow, COPD and CHF |
| I want to be able to do more physically | “But cleaning the windows and hoovering everything, I can't do that yet. I want to get that back again. Yes, I do want to be able to do my normal things again.” Female, aged 48, married, CHF | ||
| I want to be able to do things that are important to me | I want to be able to do fun things independently | “…..I always enjoy walking; I've always done that. But I can't go so far anymore.” Male, aged 82, married, CHF | |
| I want to be able to do nice things with my loved ones | “I still want to do so many nice things. With the children and with each other.” Female, aged 69, married, COPD | ||
| I want to receive care that is right for me | I want to be heard for my knowledge gained through experience | “I've now got a regular cardiologist again; I've seen them once already. But when I saw them they got so carried away my husband said: “Calm down now!” She grabbed a folder and said: “Now, we have to increase this to the strongest dose. Then my husband said “Whoa - not so fast, I've got a story about that.” Female, aged 72, married, CHF | |
| I want to get care when I want it and from whom I want it | “At the hospital in [place] you ended up in a room on your own and they closed the door at night and I felt like I was in a prison and when the door was open then it was so busy in the corridor and uh, (sigh) there you were then. I sat waiting until the next day came. I thought it was terrible there.” Female, aged 74, widow, CHF | ||
| I want a clear explanation in normal language | “I find the cardiologist quite accessible but they use loads more difficult words. It's easier to talk to the nurse.” Male, aged 49, married, CHF | ||
| I do not want my HCP to impose something on me | “I have been able to put it [heart rehabilitation] off for three years, but they keep nagging on about it.” Male, aged 80, living together, COPD and CHF | ||
| I do not feel the need for contact with a HCP on a personal level | “Everything I want to say, I can say to the nurses, to a couple of them anyway, not all of them. The younger ones are no good to me. But definitely with the pulmonary nurse and the oldest carer. They know me inside out. I don't need more than that.” Female, aged 82, widow, COPD and CHF | ||
| To say what is really preoccupying me | The influence the disease has on my life | That I cannot do as much physically because I do not feel good | “I used to always walk to the football pitch. That's a couple of kilometers outside the village, I can't manage that anymore and I think that's terrible.” Male, aged 83, married, CHF |
| What I think and feel because I cannot do as much | “I need him [her husband] for everything. That's such a shame.” Female, aged 69, married, COPD | ||
| How I experience the quality of my life | “I have often sat at the table howling that I can't carry on like this anymore. Then sometimes you call out: ‘If she has to live like this, then it's not worth it anymore’. Female, aged 48, married, CHF | ||
| What comes to mind when I think about my future/end of life | That I want to know what I can expect in the future | “…whether I have any chance of going back to work again. What will I still be able to do in the near future? Will I become a vegetable? Male, aged 49, married, CHF | |
| That I have ambivalent feelings about the end of my life | “Because sometimes as far as I'm concerned, it's not worth it anymore. Then I think but there's no turning back. Then sometimes I think just let me carry on sleeping. But I don't want to go, I don't want to leave the children and I still want to do so much [gets emotional]. But I just can't manage it.” Female, aged 69, married, COPD | ||
| What thoughts and worries I have | “Well, I wake up and I'm a burden to him [her husband].” Female, aged 69, married, COPD | ||
| What my negative experiences are with my health care professional | That I blame my HCP because they have made mistakes | “I was not so happy with the new cardiologist. He was a nice bloke but he made a couple of mistakes.” Female, aged 88, married, CHF | |
| That my HCP does not do what is expected of them | “He (GP) hasn't called to find out how it actually went. I had expected that he would. That would have certainly been polite of him.” Male, aged 48, married, CHF | ||
| I do not agree with the treatment prescribed by my health care professional | “I get given morphine but I asked for a sleeping pill. The doctor says I can have it [morphine] every other day. Well, I'm not happy about that. I want it every day. I disagree with this, because otherwise I'm very restless.” Female, aged 69, married, COPD | ||
| That my HCP lacks empathy in their communication with me | “….we [cardiologists] have finished treating you, we [cardiologists] can't do anything more for you. I felt really anxious because I thought so, ‘finished with treatment and we can't do anything else for you because your heart is so bad’. I thought this is it then, the end. That's what it seemed like to me. That's how I understood it and I was totally out of sorts…You do take account of it but never really think what it actually means.” Female, aged 72, married, CHF | ||
| That the test results mean more to my HCP than how I feel | “We went to the doctor's and she said that everything was good. The heart film is good, blood is good, blood pressure is good, everything is good. And I said but I don't feel good.” Female, aged 88, married, CHF |